Scared about neurologist appointment

[LookingGlassRuby]

Hi

I have had pain and fatigue for two years, thought it was joints but GP thinks its muscular and nerve now. After I had covid a few months ago, all my symptoms got dramatically worse two months later. I get so tired everythings blurry. My sleep is never restorative, i wake a lot. My fit bit shows low HRV and heart rate above resting during sleep. I also had an early meno which is linked to low hrv. Excerise does raise my HRV to a better level but it's hard to do it with all the pain and exhaustion

I have been losing a lot a strength in my right arm - it's really scaring me now. My arm tires so fast just emptying the dryer. I have pain when walking. Wake in pain in my elbows and hips. Im tired all the time.

Tried to go out geocaching with my kids last week - had to keep resting but even so, 800m walk wrecked me. (Usually 250 meters and rest, and 250 back is max i can manage these days) I had to get back to the car and was in tremendous pain - upper chest, neck, upper back, head,so bad that evening and sunday. Out of hours sent me to a and e. Ecg, bloods and chest x ray were all clear so they assumed it to do with the ongoing pain and weakness.

Its several days later and pain finally subsiding, exhsuation still intense.

I have a neurology referal now - looking to be mid July.

I'm so scared. Im worried its M.S. and i have nerve issues that could point to that but i googled last night and now ive read about ALS and im terrified. I think because of the nerve issue too, it points away from ALS but im terrified either way.

I have 4 kids, left an abusive relationship, have PTSD. 2 years of family court hell and the kids live with me. Theres court ordered overnights.

I have no family, I am a single mum and I am terrified. Im just so exhausted and so scared for whats wrong with me. Scared ill lose my kids if i have a condition that limits me. Theyre my life, I can't go on without them.

I just need to talk to someone. Need to hear about neurology appintments and outcomes, need reassurance that probably only the neurologist could give me. I just am so, so scared.

Sorry you have all this on your plate. I know it’s hard but try not to go googling yet. It could be something nasty it could be something you have never heard of. MS can cause pain but not the way you describe that’s linked to activity rather than nerve pain for no reason. ALS/MND is weakness rather than sudden pain for first symptoms as far as I know. All you can do now is try and look after yourself as best as you can.

Can you try keep diary of what you are doing and what the pain is like to see if there is a pattern? Can GP give you anything help with pain so you can keep doing the basics?

Nobody’s kids get taken off them when they have an illness. So don’t panic about what might happen in the very very rare event you have some sort of terminal debilitating illness and you need support. Deep breaths for now, if it is something to worry about you can worry then!

We have a long running pop in how you are today thread here
www.mumsnet.com/Talk/chronic_pain/4188376-chronic-pain-share-your-moans-and-achievements?pg=28

We all live with pain for one reason or another and try help each other through.

How are you getting on @LookingGlassRuby

How are you? Just wanted to say that when I was dx with MS it opened up a world of help to me, not just medical but practical too. I got a social worker who honestly wanted to help me manage dd, cope with work and with life in general.

I hope tour experience is similar.